Tomorrow is a big day for me. It will be my first day back to work in close to a year and a half. We found a great nanny to watch Caleb & Lalo 2 days a week, so that I can work. It is very part-time, but I still want to be the one who runs the show in terms of his therapy. Lalo has therapy 4-5 times a week, plus a nurse visit every other week, and still lots of doctors appointments, so even 2 days (plus Saturdays during tax season :) ) will keep us insanely busy. I'm nervous on how well we will manage everything, but excited too to get back to that part of my life. I think it will be really good for Lalo to have a new caretaker that can focus more on just fun stuff and I think it will be good for Caleb and Lalo to spend more time together. Wish us luck on this big transition.
Not too much to report with Lalo. He is getting over RSV. RSV is a bad cold for most kids, but for kids with lung issues, it can be very serious. Since Lalo has hypoplastic (underdeveloped) lungs and a history of chronic lung disease, he receives a monthly antibody that is meant to help him fight RSV. It is very expensive so insurance is stingy about who they cover to get this, but I'm so glad Lalo does because he really fought RSV like a champ. Too bad I think this is the last winter he will be eligible to get it.
We have also just started a weekly feeding therapist. Hopefully, we will be able to get Lalo to start taking an ounce by mouth, so we can get a swallow study and make sure it is safe to move forward with a more intensive feeding program. We are constantly working to move forward on his digestive issues and give him some more hours during the day without his tube. It's very slow going. Our therapists are also
starting to discuss if Lalo is ready for constraint therapy. This form of therapy puts a constraint on your good hand/arm, to make you really focus on your afflicted side. This would surely be a huge struggle for him, but it is supposed to be very useful at gaining more use of your afflicted side. We'll see what his rehab doctor at Kennedy Krieger thinks in the next month or so.
2 comments:
Congratulations and good luck, Sarah. I'm glad you've found someone you feel comfortable leaving Lalo with, and can get back to work on a part-time basis. Your schedule of therapists and doctors sounds exhausting, but how wonderful that all those services are available! It's great to see your pictures of the two bros enjoying each other. Love, Aunt Judy and Uncle Steve
You've broken your habit of only posting once a month, but in the wrong direction!
Aunt Kirsten
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